Hi ladies
Hope you don’t mind me crashing your thread but I have aquestion and you all seem to know what youre talking about. I had mx 4/9 lymphs clear, starting fec on 14/10. Is it normal to be offered a scan? I wasn’t offered one and my hubbie thinks it might be a good idea to ask for one just so we know exactly what situation is re spreading. Also have been getting a pain in my back, sort of opposite where boob was (if you know what I mean) which is sort of burning pain and am thinking the worst.
thanks and good wishes to all
cazzb xx
Heya Ladies.
Sorry swamped with info today so excuse me keeping this short… reading up on bisphosphonates this weekend as looking like I will do hormones but with some variant of bisphosphonates too.
Chris. The risk of another primary diagnosis of BC in your other breast comes down to a lot of factors like your age, the grade of the tumour you had in the first place, genetics and things like that. When I was diagnosed with the tumour in my right breast and they found grade 3 cells the consultant suregon explain that because a breast had a tumor that was changing that fast and I’m only 33 the changes of the other breast developing a tumor were uncomfortably high. I had a scan and mammogram later that same day and they found a grade 3 tumor in the left breast so the decision for me was made there and then, bye bye both breasts was the only sensible option.
That doesn’t mean it has to be the same for you. I don’t think most women who have BC in one breast get it again in the other one. So I’m afraid that’s really one to ask your onc/surgical team about. Sorry not to have something more conclusive for you.
cazzb: Another toughie, My hospital doesn’t do scans as a matter of course and when I asked about it they explained that if somethings there but under roughly 5cm it doesn’t show up so a clear scan doesn’t mean your all clear, and they usually will find something as a person will have damaged something in their life and so you find yourself worrying about dark spots etc which are nothing to do with the cancer. The first indication of trouble is usually pain so they prefer to do touchy feely checkups very regularly instead. But other hospitals scan all patients as a matter of course regardless of lymph involvement.
I actually like the team I have now and am quite happy with the no scan policy personally. I asked about pains in armpits etc yesterday as it’s hard to know what’s chemo related or not and Dr D explained that enough FEC could bring an elephant to it’s knees and it will take the better part of a year for all side effects to completely pass, use your hair growth as an indicator basically, it takes months for it to get growing completely normallly again. So mention the pain to them for sure but I wouldn’t worry too much if you’ve had surgery in the last few months as I had strange sensations like phantom boobs and if you tapped me on the back I felt it on the front, it’s part of the brain remapping your nerves after surgery.
Thanks Angie
Will mention it to BC nurse and see what she says. think I am prbably being a bit over sensitive, probably a bit on edge re chemo starting next week.
Cazz x
Hi all: My word you gals have been busy during the last week! Had a good few days in Grasmere - will do the Michael WInner later.
Lily: so sad about Trixie, we all get so attached and then have to do the hard thing, but compared with what humans go thru at least it is quick.
We are back on the poison on Tuesday, so hope you are OK and we get over it quickly, at least we can see the end of the road now. Am having neighbours round for champers on the night I take the last chemo pill - should be 25 Nov, may even find some fireworks.
Keep going and will get back to you all when I have had time to read all the info, particularly Angie with the things to boost the system after the chemo.
Lol
Julia
Hi Ladies
Only 13 posts to go!
Lily - so sorry about Trixie, it’s dreadful for us humans to deal with even though we know it’s for the best. As Julia says at least it’s quick, totally painfree and unlike how we deal with humans! I agree with Angie about the ignatia (you can get it from Boots) but hadn’t heard about it for dogs! I only took it myself when my poor little cat was knocked down and then had to be put down. I really felt it helped as I was very upset. Apart from this dark cloud over your week I hope all is going well, you certainly sound busy! It is good to feel useful and a bit more ‘normal’ isn’t it? That’s why it helped with me working through chemo but it’s not something everyone can do from choice - I’m just very lucky with my job. I’ve been busy at work this week but by busy I mean doing 4 mornings! So not that busy at all. However, after so much hospital intervention in the last 10 days I’ve been chasing around catching up on household things in the afternoons. It has been so nice not to have any hospital visits this last week and my next is 31 Oct, then every 4 weeks - bliss compared to you, Julia, Bev and Kirsty who are still on the old poison.
Angie - Are you having Bisphos as you’ll be post menopausal with other treatments? Tamoxifen is meant to keep the bone strength up so, unless you’re being plunged into the menopause, I’m surprised they’re being used. However, please explain and I’m sure all will be clear!
Chris - you can always start another thread with your questions, if you’ve not done already, as it’s a bit hidden in this one. You’ll then get alot more answers I’d expect, however please ask us anything you think we can help with.
Cazz - good luck for Tues. As you may have read on here, chemo is total cr@p but you will get through it. Again, if you’ve not started a thread like this one it’s worth it to get support from ladies going through the same thing at the same time. No-one of us had ‘met’ before this was started and I think we’d all agree it’s been such a help to be able to express ourselves on here. My, the things we’ve talked about 
To everyone else on here, hope you are all doing well, life is being kind and you’re enjoying the only decent weather we’ve had all year. Sorry if I’ve missed anything I was meant to answer!
Nicky xx
Well I have some good news.
I’ve only managed to take vits and iron supplement (spa tone water) for 4 days so far (been a bit lax and after the rigourous take steroids, anti sickness of chemo who wouldn’t be but had my bloods taken yesterday with the rads planning and got the results today… all numbers are happily on the way up. I’m still feeling knackered but I have a proper immune system, plenty of red blood cells and platelets, basically should heal from cuts and grazes in decent time so now it’s building on that.
The numbers were actually higher than when I started!
Higher Nature optimum nutrition vitamin combo is what I’m on. It’s got no nasties either I don’t even see soya in the list except for beta carotene from soya.
Mum has accepted that I’ll probably do the tam etc but is sad that I need to, it’s so hard telling your mum the full truth about your prognosis, she though it was good, it’s actually moderate, ie 64% starting point but onc is waiting to hear about the bisphosphonates trial data as we’d both like me to do that with the hormones as it seems very promising and I’m concerned about bone density with early menopause.
Hope you all have a great weekend especially Julia and Lily before the bunker next week, you old war hero’s.
Nicky… yes it would be because I’m pre menopausal, very much so, it seems tamoxifen reduces bone density if you’re pre rather than help like when you’re post. The regime we were discussing as an ideal would be 2 years on Tam and then 3 years on an AI (which would be when I’m post menopausal I think) and using bisphon’s through it as per the latest trial data. It’s not yet approved for those of us who just had primaries but because I had 2 grade 3 tumours and one of the b*ggers was trying to get through the muscle wall it sounds wise to make my whole body as inhospitable as possible. In fact my whole hormone status is questionable now as apparently they went back and studied the tumor again and did find some hormone receptive cells at the core of it so am I really triple neg at all?
After the reading I did on the recent research over cancer and stem cells it’s all starting to make a lot of sense. I wouldn’t be at all suprised if those cells were the core of the cancer and the non hormonal responsive cells were daughter cells. Sorry getting to scientific here I know, if anyone wants the link to the economist article let me know it’s really fascinating stuff if you like science and very encouraging for cancer research in general. Just search the economist website for cancer and you’ll find it.
Hope I haven’t overloaded anyone with too much there, in essence it sounds like they got it out of me while it was changing.
The economist article is called The root of all evil? and is from last month.
Nicky… if you’ve got any advice for those of us who may doing hormone therapies I’d love to hear it, especially as you have experience of it and have used homeopathy etc. Anything I can do to maybe prepare my body in your experience?
Cheers
Angie
Welly test (bought new wellies today must go get MUDDY)
Wow had a perspective shift tonight.
A good friend of my mum’s daughter died this week, she was only 14, she took her own life. Now that’s tragic poor love.
It makes you wonder how and why doesn’t it. Stay strong ladies, happiness isn’t always possible but keep the fight in you.
Lots of love
Angie
Hi,
thanks for all those kind thoughts about the poor doggy, we are all ok and know we did the best by her. I sneaked in and paid the bill today, as that is always the final insult. The vets even sent her a thinking of you card!! I think the young vet rather likes seeing her! I feel like the voice of doom, as I heard this morning that my cousin in Australia went to wake her 17 year old son and found him dead. I am stunned by it, even though we only met him once and have been tearful on and off when I think about them and how they can possibly keep going after this. They could not have children so he was adopted and is their only child. He is a minister so hopefully that will support them. It was made worse by having the police descend on the house as well as ambulance, etc. Still working out what on earth to put in the card at a time like this. It made double chemo shrivel into insignificance.
Angie thank you for the ignatia tip, I will pass that on. Apparently Chester, the other dog was howling in the garden at 2.30 a.m. so they will not be popular with the neighbours if he keeps that up. I don’t know how you had a CT scan without the contrast, etc but good for you. Fingers crossed that that comes back clear and that you can start your rads countdown. I have read a bit about the stem cells and thought it sounded a bit scarey. Did I read that it was unpleasant having them put in, in an odd way? Good idea to go on a trila if you like it as you will get more follow ups as well as a great new support from a research nurse. Mine is brilliant and so available when I need anything. she is currently discussing my port removal and rads with the rads specialist macmillan nurse in another hospital as I don’t want to waste more weeks than i need to. Happy wellying.
Hi Nicky, thanks for your kind thoughts too, My Mum gaveme rescue remedy but I hate the taste of it, I think the alcohol in it is brandy. I threw it away, not sure what it does for some people but something tasting nice would cheer me up quicker. Please tell me I will be able to eat chocolate again soon, those of you who are no longer glowing from chemo. I wish I could work but secondary schools are no go areas. I try to do work from home but they ignore me completely and put it down to health and safety and legal issues with discussing work with someone off sick. I have not even been allowed tohave a coffeee with my friends at break or put one toe through the door since I left at the end of March. My treatment is next door to the school! That is their idea of looking after someone. Would have been so lonely without all of you. Nicky glad you have a nice long run now without treatment, enjoy it. Julia glad you sound ok, off we go for number 7 next week. When is your last hospital visit date. I have mine all iv so should finish on 18 November just before your last tablet. Hope your next one is ok and blood counts are high enough. Cazzb scans are routine in our area, both full body bone scans and a CT scan of the trunk. I was relieved to have them and it gives them a baseline 3D image to look back on if they need to, hopefully never. My argument would be that not all spreads can be felt early, it depends where they are. You could ask and see how they respond. The back seems to be a familiar thing for many people, although hard to know in someone else. The rule I was given is, if it hurts for 2 weeks report it but I would much sooner myself. Burning comes from nerves so could be to do with the armpit as the numb part goes right round the back if they hit the nerve. Good luck anyway
Love
Lily x
Hi: Just a quickie - Lily my last poison date is 18 Nov same as you but have another 7 days of tabs so actually finish on 25 Nov. That’s when we hit the champers. Have meeting with onc on 20 Oct when we shall have interesting discussion about the rads and hormone stuff . Will get around to reading all Angie’s scientific stuff later. Have just had news that daughter of friend has just had mastectomy and is now going on to chemo. Have sent her all the info about wigs, etc and suggested she gets on here to hear what it is really like.
The sun is shining here so am out to do things.
Everyone have a good weekend and good luck for whatever is coming our way next week.
LOL
Julia
Hiya All
Back in land of living, computer been down for days! Hope all as well as can be.
Lily, hope all going well.
Carrianne glad you had fun in grasmere, spent some nice time there!!
Lily you seen so on the ball with info which i was that up to date. Glad rads planning went well, beat you have 9 tattoos, two too small so had see through plasters and marker on for all time, in a wierd way quite like them sign of what been through, wierd or what! Good luck with rads. I really didnt mind dyson to be honest, tells a spade as a spadejust upsetting. Feel bad for complaining but scared that all done an dusted by tuesday. Why tamoxafin, Im worried, told cos having ovaries out going on arimidex andsome bone strengthening stuff but havent had date for op so bit worried can come back in menatime.
On plus side even though turning into recluse, bacdk to decorating again and watching x factor!!!
Loveto you all
xxx
p.s. well how are we going to celebrate hittng 1000 posts, cant believe it!!!
It says the last post was 1012 to me… I think it’s because it includes private messages so we’ll all have a diferent 1000th post!
I know what you mean about dyson. I like that honesty though, I know where I stand and my friend in the village was treated by him 10 years ago nd she’s still here ad smiling shes’ the only person I know who’e been treated by him and part of the 10 years stats so I guess I could say he has a 100% success rate when it comes to people I actually know.
Don’t worry about recurrence just yet Lisa. I asked him about how fast these things can happen and while recurrence in the first year is possible it’s incredibly rare, more important to make the right long term choices. I’m not going for ovarian ablation or removal yet, there’s no known history in my family and nothing genetic yet. so the standard route of tamoxifen makes sense here. I think if I were closer to 40 it might be a different decision.
gotta go walk the dogs… later dudesses
Angie
hi everyone
hope everyones had a reasonable weekend, take care. x
Hi,
what lovely weather today thank goodness. My son and my eldest daughter’s partner did the cancer research ’ run 10 k ’ race. Both had inuries but managed to do it in 1 hour and 1 minute. We sat in deck chairs with their dog (mine would have been far too badly behaved) and waved them off and then cheered everyone coming back in. I am so emotional on chemo I nearly cried again with all the signs on their backs, had to concentrate on not looking at my son’s sign. He did make me laugh though as I had said I bet he is half naked when he gets back and sure enough he ran through topless. He came through and poured his bottle of water right over his head. Anyway it was a great event and I hope they raised a lot of money today. Came home and cooked a big roast for everyone, so taking it easy now they have all gone home. No doubt my son is about to discover he has 10 hours homework for tomorrow. That is how Sunday evenings usually go.
Julia I am not sure when I see the onc again, so will have to ask on Tuesday when I go in. We will be doing rads through all the Christmas shopping days and mine is in the middle of a town with no parking. Hope the next one goes smoothly for you. Have your nails gone a horrible colour on CMF? Mine look like I smoke 20 a day, sort of orangey with some darker stripes. They look fab.LOL . Did you have a lovely break?
Lisa glad to see you back. I go in for the first part of number 7 on Tuesday, getting very fed up of it. How many rads have you left to do? What is the latest on your treatment after that? I have been watching x factor too, love it. My real square eyes programme is Holloaks, which has big story line going on at present. Take care and have a good week x.
Lorraine hi, are you still enjoying no treatment or are they planning to interrupt your peace again? It was a lovely weekend and quite a surprise after some chilly days. Nicky did you do anything nice this weekend as I seem to remember you have a nice gap before the next visit? How is your hand now?
Angie so sorry to hear about that poor girl. My cousin’s son is most likely from his epilepsy, which they had been struggling to control. It does change your perspective, too right. How about the wedding? Any date yet?
Hugs to everyone on here, have a good week if you can
Lily x x
hiya all
Angie thanks for that, maybe I should try and relax a bit and not worry about it coming back so much. any crack on the wedding, we could do with a virtual hen night on here, would be a first! Champers, strawberries and good music. Good luck with rads, will miss you by a day!!!
Lily, race sounds lovely, glad you enjoyed, everything is much more emotional these days, I can cry at anything. Loving X factor, not into hollyoakes, cant afford to get into another programme. Good luck with number 7, nearly done now, you are stronger than me!!! Have 2 rads to go sore ribs and neck and slight sunburn!!! but walk in park compared to chemo, mind you dreading someone trying to get blood outa me, gave up before rads as I was scaulding me arm and still no vein. Waiting anxiously everyday for news on Op, would have felt much better if could have been done locally as know nurses in hospital now but have to go to Newcastle Im just constantly worried my live is going to be turned upside down more than already is but also dont want to waste my time worrying
Love to all nicky hope all is well
xxxx
Will fill this in more later but just read small bits as its been so long since i was last on (long story)
Lily the thing with your eyes I lost my contacts due to dry eyes and went to optitian yesterday to arange another appointment for eye test explained that I was on chemo and was told the chemo does improve your eye sight apparently girls mum went through it and after she didnt need glasses see there is good thing s that some out of it but wouldnt recpmmend it for improving eye sight lol
Joanne
Hi everyone.
just a little note to let you know I am reading the posts but too knackered to respond. In the black hole.
thinking of you all.
Bev x